Aa
lexman - Baraclude
I've noticed that you been responding to older thread sharing your own situation. Just want to see how you are responding to Baraclude. I am also on that and finally reached undetectable DNA. Did your MD suggested any other course of treatment?
Re: Tenofovir, it uses a similar docking model to Hepsera. Baraclude has a far better resistance profile than Hepsera. So let's wait on Tenofovir because it's still in stage 3 trial need more info on its reistant profile for HepB.
Re: Tenofovir, it uses a similar docking model to Hepsera. Baraclude has a far better resistance profile than Hepsera. So let's wait on Tenofovir because it's still in stage 3 trial need more info on its reistant profile for HepB.
Sorry it took so long to respond. Peg is alright, the first week sucked, second week was a little better. Each week seems to be getting better. Had flu like symptoms, chills, fevor, couldn't sleep first week, now I just have feavors from time to time and am tire a lot of the time. I finally got back into the gym. I really feel my body is beating this virus, at least I hope. I am staying positive. I don't know what genotype I am yet. My eyes were hurting for about a week, and someone told me that the eyes are connected to the liver, but I don't know if it is true. usually after I take the shot I feel a little fevor come on, then really tired the next day. I am feeling a lot better and look forward to my next shot. I pray everynight that this peg is working and that when i go in to do my blood test the dr. is going to tell me I am positive for surface antibodies, I can't wait, and I really hope it happens.
I was really scared of taking it at first because of the side affects. but its not that bad, but from time to time i don't feel good and I am always tired, I have to make my self work out and stay in shape. Thanks for the info on Spirulina, I don't know if I need it right now, I am trying to stay away from all medicaion, like tylonal etc., if you guys ever have any questions about PEG just let me know, seem like not very many hep B people are taking it like me.
I guess its kinda silly, but I look forward to my shot every week even tho I don't feel good on friday nights and am tired on sat and sund, but I really believe its worth it and I am going to beat this. If any of you need any help or want to talk I would love to talk and provide info about my experience on this PEG
God Bless you all
KU
Staying positive
Going to beat this
I was really scared of taking it at first because of the side affects. but its not that bad, but from time to time i don't feel good and I am always tired, I have to make my self work out and stay in shape. Thanks for the info on Spirulina, I don't know if I need it right now, I am trying to stay away from all medicaion, like tylonal etc., if you guys ever have any questions about PEG just let me know, seem like not very many hep B people are taking it like me.
I guess its kinda silly, but I look forward to my shot every week even tho I don't feel good on friday nights and am tired on sat and sund, but I really believe its worth it and I am going to beat this. If any of you need any help or want to talk I would love to talk and provide info about my experience on this PEG
God Bless you all
KU
Staying positive
Going to beat this
Welcome aboard :) How do you like your PEG? I am planing to start on it once my VL goes down, it was 246,000,000 in May. I don't know what it is now... but I am hoping it is going down. We will get more B folks if we keep this thread going. For your fatigue I can suggest a vitamin called Spirulina. You may want to ask your doctor about it if he OK's it. I read that on one of the Hep C forums, some people on interferon take it, it takes fatigue away somewhat. My new doc is not that much against herbs. And actually said I can take Milk Thistle with Entecavir. But with Interferon though I read some doctor's say that if you are on pegasys that it may dilute it's strength.
Steven I read about Dendritic Cell vaccines that hold lots of promise. Interesting process by separating patients own monocytes from plasma, loading them with HBV antigens, culturing these cells for a week and then giving a patient an injectable vaccine. Essentially immune system tweaking. They actually did some pilot studies on 19 people in China in 2004, 17 patients had their DNA reduced by 10 logs... and I think 10 lost HBV DNA.... none however seroconverted to Anti-Hbs. So maybe we don't have to wait that long. So far yes interferon is the best bet. Both an antiviral and immune modulator, and there is no worries with resistance. Unlike with the antivirals. And I think going the same route on chronic HBV as with HCV, interferon plus an antiviral for 48-52 is the right way to go in the meantime.
Steven I read about Dendritic Cell vaccines that hold lots of promise. Interesting process by separating patients own monocytes from plasma, loading them with HBV antigens, culturing these cells for a week and then giving a patient an injectable vaccine. Essentially immune system tweaking. They actually did some pilot studies on 19 people in China in 2004, 17 patients had their DNA reduced by 10 logs... and I think 10 lost HBV DNA.... none however seroconverted to Anti-Hbs. So maybe we don't have to wait that long. So far yes interferon is the best bet. Both an antiviral and immune modulator, and there is no worries with resistance. Unlike with the antivirals. And I think going the same route on chronic HBV as with HCV, interferon plus an antiviral for 48-52 is the right way to go in the meantime.
Forgot to ask. You mentioned that you have a mutant strain. Did you ever confirm that with genotyping? If so, which one do you have, Precore or BCP (like Lex)?
Kujerry, good to see you checking in. We all think about PEG because in studies it has the highest seroconversion rate. Both Lex and I are considering it for the future. So please do keep us inform of your experience, especially given the similarity of our respective cases. There are tons on info on PEG on this forum but they are from the HepC folks. So I am very interested to see how you with HepB respond to it, how it's working vs. side effects, what works and what does not.
Hey guys really enjoyed reading your conversation. I noticed both of you are in your thirties, I am 34 also and have hep B, looks like we are all in kinda the same boat. I really hope you Lexman, get our insurance thing worked out. I am praying for you and StevenNYer thanks for all your help.
I am on PEG and I just took my 3rd shot tonight, still have a log way to go but I am going to beat this. I AM, and I know you guys will join me for the ride and beat yours too. I also stopped drinking cold turkey, avoid smoke and exercise. Well since I started peg I haven't exercised but I plan to this week. Just been really tired. You guys keep fighting, staying positive and we will beat this together.
Thinking about you guys.
KU
I am on PEG and I just took my 3rd shot tonight, still have a log way to go but I am going to beat this. I AM, and I know you guys will join me for the ride and beat yours too. I also stopped drinking cold turkey, avoid smoke and exercise. Well since I started peg I haven't exercised but I plan to this week. Just been really tired. You guys keep fighting, staying positive and we will beat this together.
Thinking about you guys.
KU
In NYC, the medical insurance for the low income is pretty generous. While it's hard to get Medicaid, a similiar Family Health Plus allows for a pretty high income and a person could still qualify. I heard that it's much harder in CA.
My doctor also thinks I got it as a kid and I think he's probably right. But how and exactly when...who knows.
My labs are unique so my doctor is waiting for the virus to make up its mind as to what to become. What the virus does, I have no control. All I could do is try to supress that little bastards. I may have to take meds for life as well.
I try to take hold of things I could control. Since being diagnosed, I stopped drinking cold turkey, not even a drop of beer, avoided all smokes, and have been eating healthier to give my liver some help.
So hopefully something better would be available in the distant future. We have to look on the bright side in that treatment did come a long way. At least we are not treating with LAM, which could open another can of worms.
So let's keep fighting and keep each other informed. Power to us my friend.
Steven
My doctor also thinks I got it as a kid and I think he's probably right. But how and exactly when...who knows.
My labs are unique so my doctor is waiting for the virus to make up its mind as to what to become. What the virus does, I have no control. All I could do is try to supress that little bastards. I may have to take meds for life as well.
I try to take hold of things I could control. Since being diagnosed, I stopped drinking cold turkey, not even a drop of beer, avoided all smokes, and have been eating healthier to give my liver some help.
So hopefully something better would be available in the distant future. We have to look on the bright side in that treatment did come a long way. At least we are not treating with LAM, which could open another can of worms.
So let's keep fighting and keep each other informed. Power to us my friend.
Steven
I think one has to pretty much have to live on the street to get something from them. Or to get really sick. I hope something will be done about health care in few years. Almost everyone I spoke with is unsatisfied regardless of insurance.. doctors don't read lab reports, don't explain anything, don't bother do thorough testing, laboratories loosing lab reports... insurance companies not willing to pay for certain procedures... yeah that is a topic in itself.
Steven, How long you think you had your Hep B? They tell me I had mine probably since I was a kid. Although I did not infect anyone before. I have a wildtype virus, basal core mutant. Genotype A.
Steven, How long you think you had your Hep B? They tell me I had mine probably since I was a kid. Although I did not infect anyone before. I have a wildtype virus, basal core mutant. Genotype A.
I am sorry for these challenges you face. Stay strong and don't give up. Don't know if this even make sense and apply to you but maybe you could ask your MD to prescribe Baraclude 10mg and take a half pill. If you are taking 5mg like me, you get a 2 months supply. I know of other who do this on other meds to save money.
I also heard that CA has tighter doors with Medicaid than other states including NYC. Is a move to a more friendlier Medicaid state possible.
Just throwing out some ideas. Again, stay strong. I wish you the best.
I also heard that CA has tighter doors with Medicaid than other states including NYC. Is a move to a more friendlier Medicaid state possible.
Just throwing out some ideas. Again, stay strong. I wish you the best.
I am 33, live in Southern California. Was diagnosed in January. I will measure my viral load in September see where I stand. I am taking a break from doctors.... :))
I am trying to stay positive but with a nightmare of a health care I have experienced it is very hard to do. It is just a shame that a person is denied health care because of his disease and I have to get into debt because of it. And if you are a cash patient doctors charge you anywhere between $250-$400 on the first visit when insurance only pays them around $50 or so. I Wanted to purchase health insurance...Sorry we can't cover you. At my new job I have to wait a year before I can use my health insurance because of pre-existing condition. Applied for Medi-Cal, waited six months, was turned down and now I have to wait for a hearing at some unknown date... go there and actually prove that I have a disability :) It is sick. I don't speak only for myself.
I chatted with to a guy in Finland he has Hep C... get's everything for free...pegasys + rebetol no hassle he lives in a country where there is free universal health care.
That's why I decided to take a loan not to be humiliated like that anymore...I wish I listened to my friends that told me «the only you will get is a big headache in trying to get something :)))» and if I have to I will move into my parents place because I am really strongly thinking going on a year of interferon treatment once I get the VL down.
I am trying to stay positive but with a nightmare of a health care I have experienced it is very hard to do. It is just a shame that a person is denied health care because of his disease and I have to get into debt because of it. And if you are a cash patient doctors charge you anywhere between $250-$400 on the first visit when insurance only pays them around $50 or so. I Wanted to purchase health insurance...Sorry we can't cover you. At my new job I have to wait a year before I can use my health insurance because of pre-existing condition. Applied for Medi-Cal, waited six months, was turned down and now I have to wait for a hearing at some unknown date... go there and actually prove that I have a disability :) It is sick. I don't speak only for myself.
I chatted with to a guy in Finland he has Hep C... get's everything for free...pegasys + rebetol no hassle he lives in a country where there is free universal health care.
That's why I decided to take a loan not to be humiliated like that anymore...I wish I listened to my friends that told me «the only you will get is a big headache in trying to get something :)))» and if I have to I will move into my parents place because I am really strongly thinking going on a year of interferon treatment once I get the VL down.
Lex - I am glad you responded. I am sorry to hear your treatment difficulties, especially with the insurance situation. Stay on them and don’t give up.
I have thought about all the things you’ve mentioned when I was newly diagnosed. It really is a hopeless type of feeling. I’ve come to learn such feeling doesn’t help to change the facts. So I try to be more positive. But if you need to vent count on some of us here to listen, myself included.
I know the BCP mutation puts a damper on things. But I learn that many chronic HepB have the BCP especially as they get older (like 50%) and most are still fine. Most transition to inactive carrier and never bother to monitor their condition and just don’t know they have the BCP. It’s almost like a natural progression of the wild-type strain, its evolution. But most are still fine, so I hope that is your case, especially with treatment.
If you don’t mind my asking, where do you reside and what is your age (range okay to be non-specific).
I’m 32 so my MD said not to be concern about kidney problems and to just drink plenty of water. Maybe that’s why he suggested combo treatment for me. Hepsera and Baraclude. Hepsera is supposed to be harder on the kidneys. Even with that, there are studies of people on Hepsera twice my dosage and their kidneys seem to be doing fine. So hopefully our kidneys will be fine :)
DNA reduction is a great thing. It gives your liver a break and it buys time for better treatment options to be developed. By the way what is your DNA count now after some months of Baraclude?
Meki - Thanks for checking in on us B people.
I have thought about all the things you’ve mentioned when I was newly diagnosed. It really is a hopeless type of feeling. I’ve come to learn such feeling doesn’t help to change the facts. So I try to be more positive. But if you need to vent count on some of us here to listen, myself included.
I know the BCP mutation puts a damper on things. But I learn that many chronic HepB have the BCP especially as they get older (like 50%) and most are still fine. Most transition to inactive carrier and never bother to monitor their condition and just don’t know they have the BCP. It’s almost like a natural progression of the wild-type strain, its evolution. But most are still fine, so I hope that is your case, especially with treatment.
If you don’t mind my asking, where do you reside and what is your age (range okay to be non-specific).
I’m 32 so my MD said not to be concern about kidney problems and to just drink plenty of water. Maybe that’s why he suggested combo treatment for me. Hepsera and Baraclude. Hepsera is supposed to be harder on the kidneys. Even with that, there are studies of people on Hepsera twice my dosage and their kidneys seem to be doing fine. So hopefully our kidneys will be fine :)
DNA reduction is a great thing. It gives your liver a break and it buys time for better treatment options to be developed. By the way what is your DNA count now after some months of Baraclude?
Meki - Thanks for checking in on us B people.
Thank you for the numbers
I am really heaving a touph time with Bristol-Myers in trying to get Baraclude. Since April they have my application. First they said that application filled out in 2007 was filled on a 2006 form. Ok so I filled another and my doctor signed it. Called in a few weeks they said they can't read my social. Filled another form it was signed by the director of the clinic not by a doctor. So now I am being told that doctor has to sign the application. Director of the liver center has signed it... and the doctor works for them. It makes no sence. So I just gave up with them. And started buying it. So I hope Roche maybe different.
I am really heaving a touph time with Bristol-Myers in trying to get Baraclude. Since April they have my application. First they said that application filled out in 2007 was filled on a 2006 form. Ok so I filled another and my doctor signed it. Called in a few weeks they said they can't read my social. Filled another form it was signed by the director of the clinic not by a doctor. So now I am being told that doctor has to sign the application. Director of the liver center has signed it... and the doctor works for them. It makes no sence. So I just gave up with them. And started buying it. So I hope Roche maybe different.
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Encourage your patients to use Pegassist
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o Patient Insurance Verification
+ Ascertain what drug coverage the patient may have for PEGASYS and COPEGUS
+ Explain patient deductibles, copay and cost sharing obligations for PEGASYS and COPEGUS
o Coding Issues
+ Answer PEGASYS coding and billing questions
+ Provide guidance and up-to-date information regarding payor policies relevant to PEGASYS and COPEGUS
o Claim Denial and Appeals Review
+ Provide general process guidance in connection with the preparation and filing of a claim or with the appeals process in a appropriately denied claim
+ Review denied claim for accuracy and completeness
Encourage your patients to use Pegassist
1-877-PEGASYS (1-877-734-2797) or www.pegassist.com
Oh oh oh --- Call the company --- They have plans for even middleclass...
Try it - ok?
Meki
Try it - ok?
Meki
Hello Steven,
I am ok on it now. First 5 days had really terrible headache, muscle stiffness, irritability together with fatigue and dizziness. And I felt like will go crazy to be honest. Gradually my body has adjusted to it.
Yeah with these drugs the problem is resistance. And even though Entecavir is new I think as time goes by we will find out that there is resistance to that as well. After all all these drugs are basically me too.
I am eAg-, basal core mutant so for me there is no end in therapy...with drugs available today. None of the nukes can clear the ccccDNA of HBV from our liver cells... small chance with interferon does exist though like 10% or so after a year or therapy. But yeah interferon is hard time.. but I think it is the best bet despite what most of the docs say. They want to treat us forever we are a really good business. Because we really don't know how safe these antiviral drugs are.... Especially Baraclude...treating the liver killing kidneys.. that is not good.
For drug companies is a good idea and more profit treating HBV people with anti HIV agents, even though the two viruses are totally different... just the replication chain is the same, just because they realised that it works in coinfected folks. But so far no one is doing any type of specific research towards an effective HBV treatment standard, like there is for HCV – interferon + ribavirin they have like 80% chance after a year of hard time to beat the virus... or force it in remission for good. But someone like me i have to be on this ***t for ever. So I think that we desperately in need of an effective universal treatment regimen. In Europe they prefer more interferon, here in States there is a push for long term antiviral therapy. But there is really no standard and that is my biggest problem. Vaccine from HBV is available for 20 years. And yet there is no effective treatment.
Maybe we can start discussion on these issues here... compare notes and opinions.
I plan after I lower my VL to go on Pegasys... take a loan I guess to pay for the medicine. Because I am being denied health insurance because of my Hep B....that is a story in it self with these insurance companies :)))
I am ok on it now. First 5 days had really terrible headache, muscle stiffness, irritability together with fatigue and dizziness. And I felt like will go crazy to be honest. Gradually my body has adjusted to it.
Yeah with these drugs the problem is resistance. And even though Entecavir is new I think as time goes by we will find out that there is resistance to that as well. After all all these drugs are basically me too.
I am eAg-, basal core mutant so for me there is no end in therapy...with drugs available today. None of the nukes can clear the ccccDNA of HBV from our liver cells... small chance with interferon does exist though like 10% or so after a year or therapy. But yeah interferon is hard time.. but I think it is the best bet despite what most of the docs say. They want to treat us forever we are a really good business. Because we really don't know how safe these antiviral drugs are.... Especially Baraclude...treating the liver killing kidneys.. that is not good.
For drug companies is a good idea and more profit treating HBV people with anti HIV agents, even though the two viruses are totally different... just the replication chain is the same, just because they realised that it works in coinfected folks. But so far no one is doing any type of specific research towards an effective HBV treatment standard, like there is for HCV – interferon + ribavirin they have like 80% chance after a year of hard time to beat the virus... or force it in remission for good. But someone like me i have to be on this ***t for ever. So I think that we desperately in need of an effective universal treatment regimen. In Europe they prefer more interferon, here in States there is a push for long term antiviral therapy. But there is really no standard and that is my biggest problem. Vaccine from HBV is available for 20 years. And yet there is no effective treatment.
Maybe we can start discussion on these issues here... compare notes and opinions.
I plan after I lower my VL to go on Pegasys... take a loan I guess to pay for the medicine. Because I am being denied health insurance because of my Hep B....that is a story in it self with these insurance companies :)))
:) and thanks for the kind words and well wishes. I wish also but I keep my expectations low.
I wish everyone on this forum with Hep well. We'll drink (carrot and fruit drinks..haha) to SVR for the C's and inactive carrier for B's, until a cure is found for both :)
Steven
I wish everyone on this forum with Hep well. We'll drink (carrot and fruit drinks..haha) to SVR for the C's and inactive carrier for B's, until a cure is found for both :)
Steven
So - with HepB - active --- you either are a chronic carrier and are constantly reproducing - or you spontaneously clear. Or your immune system can take over and put it into "remission" for lack of a better word.. Still there - but being held at bay.
OK - so DNA measures how much pretty much like viral loads for HCV.
Sero convert means naturally the body takes over.. and the immune system kicks the stuffing out of the HEPB - Right?
OK - I think I'm catching on... just need to figure out how to read the total lab results for folks...
Thanks for all the info - and you know I'm wishing you a seroconvert (cause that's a good thing right?)
Or a cure that doesn't bite donkey ding a lings. LOL!
Meki
Listening to "Everything's Gonna Be alright --- rockabye"
OK - so DNA measures how much pretty much like viral loads for HCV.
Sero convert means naturally the body takes over.. and the immune system kicks the stuffing out of the HEPB - Right?
OK - I think I'm catching on... just need to figure out how to read the total lab results for folks...
Thanks for all the info - and you know I'm wishing you a seroconvert (cause that's a good thing right?)
Or a cure that doesn't bite donkey ding a lings. LOL!
Meki
Listening to "Everything's Gonna Be alright --- rockabye"
Hey Meki :) I still have chronic HepB. Undetectable DNA means that the meds are helping to stop the HepB virus from reproducing, which is a very good thing. But the virus is still there. If I stop meds they will be at it again. So two things could happen, my immune system could supress the virus to an inactive disease over time or the virus could mutate to render the meds useless. That's why resistance profile is so important. It's like buying time for the immune system to do something nice or buy time for a cure to be developed (can hope right :) So I'm still e-antigen positive, if I seroconvert to negative then I have a chance to get off meds. That's more like HCV SVR. Of course the greatest thing is to seroconvert to HBsAb, but that rarely rarely happens.
As for my tx, I started on Hepsera and Baraclude was added. No other treatment. Total treatment time is about 15 months. And treatment has been okay. I had bad reaction to starting Hepsera in the beginning. It was bad, got hives for days, stomach pain, felt sick, and thought that I was going to die. And they say Hepsera has minimal side effects. But I tough it out and it did help me. Baraclude has been great, no problems with it.
As for INF, I'm holding off. I worry about the side effects because I have a demanding job and my kids are young so I need to keep my energy up. Want to give the easier stuff a chance to help me out first.
As for my tx, I started on Hepsera and Baraclude was added. No other treatment. Total treatment time is about 15 months. And treatment has been okay. I had bad reaction to starting Hepsera in the beginning. It was bad, got hives for days, stomach pain, felt sick, and thought that I was going to die. And they say Hepsera has minimal side effects. But I tough it out and it did help me. Baraclude has been great, no problems with it.
As for INF, I'm holding off. I worry about the side effects because I have a demanding job and my kids are young so I need to keep my energy up. Want to give the easier stuff a chance to help me out first.
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